Feedback
of psychological testing to adult developmentally delayed individuals
Purpose of the assessment:
Feedback: process, purpose, people involved, time
taken.
Analysis of the process of feedback:
Adult clients with developmental delay(i.e. mental retardation or subnormal intelligence) or adults who
are suspected to have developmental delay are referred for assessment to
psychologists and psychometrists( I will call them assessors in this article) at my organization in a major city of Canada. The reasons for the
referral for assessment are :
·
After the client is assessed and found
to be developmentally delayed, he is found eligible for accessing the services
of the Developmental Sector of the Canadian province he's living in. He is eligible for receiving a monthly pension i.e. money to support himself.
·
If the client is transitioning out of
school and has had no recent cognitive assessment, he is referred for assessment. Identifying
his current cognitive strengths and deficits will help to find the right fit
for him for employment, future studies and so on.
·
If the developmentally delayed client has difficulties getting
along in the society, getting along with his family, an assessment of his
current cognitive functions will help the people who interact with him,
understand if the cognitive deficits are to some extent the cause of his
maladaptive behaviours.
Once the assessment is completed,
feedback about the findings of the assessment is given to the client by the
assessor who did the assessment.
Feedback is the process of letting
the client know, after the assessment is completed, about his current strengths and deficits with regard to
cognitive functions which were tested such as intelligence, attention and concentration, memory,
thinking, reasoning, language abilities, mathematical abilities, etc. If the
client consents, people who are closely involved with the client, are also
invited to attend the feedback. The people may be family members who live with him or take care of him or a case manager who is working
with him or staff from the group home he lives in.
Feedback is usually done in one
single session ranging from 45 minutes to one and half hours. The assessor who did the assessment
explains the tests used to assess the client, explains about his performance
and the areas of his strengths and weaknesses. The assessor tells the client
to ask for clarification if he did not understand and voice disagreement if any.
There are typically no booster
sessions done i.e. the feedback regarding the assessment is not given more than once.
Subsequently a copy of the
assessment report is given to the client and with his signed consent, copies
are also given to professionals who may be able to use it to the advantage of
the client such as his GP, psychiatrist, neurologist, his school if he is going
to enroll in a school.
Diligent care is taken so that the
report is not given to people who may use the assessment against his best interests.
In my opinion, the process of feedback
appears okay at the superficial level. But I believe that there are many concerns which necessitate
tweaking of the feedback process. I believe that this tweaking should be done in all centers of psychological testing if the problems listed below are discovered.
1. Giving
feedback, the way it is done at present, seems to be ‘going through the
motions’ than it making any sense to the client, especially if they have
moderate developmental delay or greater. Even those who are the low end of mild
do not understand 99% of what is being said to them.
2. Feedback
can be understood by clients with mild developmental delay or higher levels of
functioning if
Done
slowly,
Without using jargon,
With
repetitions where needed,
Explaining the cognitive strengths and
weaknesses of the client by giving examples of real life situations where the
assessed cognitive function is used.
It
is meaningless to rattle off the names of the tests used and the functions
tested using psychological jargon such as working memory, abstract reasoning,
etc. The use of these terms is not understood by the laypeople accompanying the
clients for the feedback. And these terms mean almost nothing to the clients as they are developmentally delayed. They may understand the three terms in a rudimentary way i.e. intelligence, memory and attention but they would not understand words such as abstract reasoning, visuospatial ability and so on. Yet,assessors don't take care to avoid these terms or explain what they mean, during the feedback.
3. Most
clients, even those with higher abilities, do not remember after a few days,
what they heard in the feedback session.
If they don’t remember, there is no way they could use the information
in their life in a meaningful manner.
4. Some
assessors give recommendations while some do not. The recommendations given
should be in terms simple enough to be understood and applied by the laypersons
reading it. It should be given in simple language, with examples and as many
day-to-day, real-life applications as possible.
5. I believe that someone needs to do the following to make the assessment report more meaningful and useful.
- collect a range of tasks typically done in today’s Toronto homes and offices;
- these tasks are divided into categories i.e. those which can be done by those with borderline IQ, mild, moderate and severe IQ
- the tasks can also be arranged by the different cognitive functions needed to do them
- the clients be informed the tasks within their capacities based on the assessment.
What I have pointed above is not something new but is something done in the vocational assessment reports. I strongly believe that psychologists who do cognitive assessment for the developmentally delayed adults should take these tips from vocational assessment reports.
6. If
it is possible to consolidate the cognitive strengths and weaknesses, along
with the other diagnosis’s symptoms (autism, anxiety, depression, etc) and any
behaviours observed in the testing and give a hypothesis about the client’s
best functioning and areas where the client will likely have problems.
The
reasons why I want the feedback interview to be tweaked are many. I have
counseled about 300+ clients over the last 8 years.
My job is counselling adults with DD. DD adults are referred to me for counselling for a range of reasons such as anxiety, depression, anger management, OCD, difficulty getting along with others, etc.
I discovered, during the course of doing my job, that many or a majority
of the developmentally delayed adult clients referred to me did not have insight about their developmental delay or autism.
I realized that counselling would be more effective if I first got them to realize they have DD or ASD and secondly they accept that they have DD or ASD. Yet, I am not saying that all clients with insight about their DD/ASD benefit more
from counseling . I have had cases where the client's insight about his DD makes him more difficult to counsel. For example, Mr.X who knows he is different from others due to his
developmental disability has been angry, frustrated and not benefitting from
counseling for a very long time compared to a cheerful happy-go-lucky client who has no idea he’s delayed.
To
counsel a person who has no insight that they are delayed is difficult at
times. Unless the person understands and accepts he is
delayed, he will not understand why he cannot do certain things and will
continue to strive in the wrong direction. The failure leads to further
lowering of self-esteem. I have had several cases with this issue.
Two clients I counselled believe they are
learning disabled and not developmentally disabled.
(1) I have tried to educate client ABC over many sessions about her developmental disability and tried to get her to set more realistic goals for herself. She continues to be in denial and is registering for a writing course to become a writer. There are four other possible pressures contributing to her denial of DD:(a) her parents, (b)her siblings , (c)her boy-friend,(d) her own lack of insight or denial. Her parents constantly urge her to 'do better' so that she can have a job, a house, a car, a career like her older sister and like 'other people'. Her parents and siblings themselves are in denial about her disability despite the psychologist explaining to them about her cognitive assessment results. The parents are immigrants with the typical immigrant dreams of success for their children. Her boy-friend does not know she is developmentally disabled and he urges her to study well and aspire for a 'better job' with a 'higher' income & become 'successful' and give up her current job i.e. waiting tables at a coffee shop, which is within her capacity. Her boy-friend wants her to get into college and later get a better job which is impossible for her level of intelligence. This person has been 'studying' for the last 4-5 years and getting nowhere. Being from a well-to-do family, she has not faced any financial difficulties due to her choices. The years past which could be used to learn a skill within her capacity or get work experience have been used to attend a college where she's learning nothing. But she is having a good time with her friends there and she's not unhappy. This is one positive aspect of this case.
(1) I have tried to educate client ABC over many sessions about her developmental disability and tried to get her to set more realistic goals for herself. She continues to be in denial and is registering for a writing course to become a writer. There are four other possible pressures contributing to her denial of DD:(a) her parents, (b)her siblings , (c)her boy-friend,(d) her own lack of insight or denial. Her parents constantly urge her to 'do better' so that she can have a job, a house, a car, a career like her older sister and like 'other people'. Her parents and siblings themselves are in denial about her disability despite the psychologist explaining to them about her cognitive assessment results. The parents are immigrants with the typical immigrant dreams of success for their children. Her boy-friend does not know she is developmentally disabled and he urges her to study well and aspire for a 'better job' with a 'higher' income & become 'successful' and give up her current job i.e. waiting tables at a coffee shop, which is within her capacity. Her boy-friend wants her to get into college and later get a better job which is impossible for her level of intelligence. This person has been 'studying' for the last 4-5 years and getting nowhere. Being from a well-to-do family, she has not faced any financial difficulties due to her choices. The years past which could be used to learn a skill within her capacity or get work experience have been used to attend a college where she's learning nothing. But she is having a good time with her friends there and she's not unhappy. This is one positive aspect of this case.
(2)Client DEF has told me that she is not 'retarded' like others and she is only 'learning
disabled'. She has no interest in building a friendship with her peers at a day-program for the DD adults she attends. Instead she tries to befriend 'typical' boys who lose interest in her very quickly. She has spent years chasing after these 'typical' boys or boys who are not diagnosed with developmental disability, boys who are in college or working. She does not get it that they lose interest once they get to know her well and continues in this pursuit. She's resolute in her avoidance of her peers i.e. guys with developmental disability who are with her in her program.
(3)The client GHI is moderately delayed and in her mid 30s. She does not ask a question to be repeated if she does not understand. Instead she says, " I don't want to talk about it' or 'I am not interested' or some such thing. She also shows anger and annoyance during conversations when she does not understand. The person talking to her gets the impression that she's upset. They never suspect that she has not understood the conversation and they also don't realize that she will not admit that she's not understood. She covers up her lack of understanding with a show of anger and disinterest.
(4)Some parents of developmentally disabled and autistic (and other disabilities) too are in denial or ignorance about their child's disabilities. This leads to poor choices, lack of judgement and this can lead to negative consequences such as financial losses, delay in getting the right help, etc.
I have seen a parent of a mildly autistic young lady refuse to accept the daughter's autism. The autistic child was put in a school with typical children which made it difficult both for the child and the teachers. She was sent to tutors for extra coaching in the evenings. When the parent finally accepted that her daughter is different and got the autism diagnosis and relevant help, the daughter was 23 years old. The mother went into depression and had a breakdown after this late diagnosis of her daughter and start of treatment. When denial is let go and acceptance starts, depression is possible but this depression can be treated. But the daughter who would have learnt a lot more if she had gone to a special school for the last 12 years, the time is lost forever.
I have seen another parent of a moderately developmentally disabled daughter refuse to let her daughter work in 'cleaning' jobs as she firmly believed her daughter is capable of doing more than cleaning, such as being a receptionist. Despite detailed explaining of her daughter's cognitive test results which indicated moderate developmental delay, the mother believed her daughter should be doing 'higher' jobs. Despite explaining the multi-tasking, presence of mind and people skills needed to work as a receptionist, the mother refused to believe that her daughter lacks the capacity for the job. She believed that the receptionist has to answer phones and her daughter could do that.
Denial and or Ignorance about Developmental Disability is the problem in the above mentioned cases. Both clients and their family members could have this denial or ignorance about the disability.
I strongly believe that unless this denial/ignorance is dealt with FIRST, it is difficult to succeed working with them. Denial and ignorance about the disability means that they are not planning with full information but are making major decisions with a huge piece of vital and relevant information missing. Making decisions with missing information is bound to lead to erroneous choices and decisions.
(3)The client GHI is moderately delayed and in her mid 30s. She does not ask a question to be repeated if she does not understand. Instead she says, " I don't want to talk about it' or 'I am not interested' or some such thing. She also shows anger and annoyance during conversations when she does not understand. The person talking to her gets the impression that she's upset. They never suspect that she has not understood the conversation and they also don't realize that she will not admit that she's not understood. She covers up her lack of understanding with a show of anger and disinterest.
(4)Some parents of developmentally disabled and autistic (and other disabilities) too are in denial or ignorance about their child's disabilities. This leads to poor choices, lack of judgement and this can lead to negative consequences such as financial losses, delay in getting the right help, etc.
I have seen a parent of a mildly autistic young lady refuse to accept the daughter's autism. The autistic child was put in a school with typical children which made it difficult both for the child and the teachers. She was sent to tutors for extra coaching in the evenings. When the parent finally accepted that her daughter is different and got the autism diagnosis and relevant help, the daughter was 23 years old. The mother went into depression and had a breakdown after this late diagnosis of her daughter and start of treatment. When denial is let go and acceptance starts, depression is possible but this depression can be treated. But the daughter who would have learnt a lot more if she had gone to a special school for the last 12 years, the time is lost forever.
I have seen another parent of a moderately developmentally disabled daughter refuse to let her daughter work in 'cleaning' jobs as she firmly believed her daughter is capable of doing more than cleaning, such as being a receptionist. Despite detailed explaining of her daughter's cognitive test results which indicated moderate developmental delay, the mother believed her daughter should be doing 'higher' jobs. Despite explaining the multi-tasking, presence of mind and people skills needed to work as a receptionist, the mother refused to believe that her daughter lacks the capacity for the job. She believed that the receptionist has to answer phones and her daughter could do that.
Denial and or Ignorance about Developmental Disability is the problem in the above mentioned cases. Both clients and their family members could have this denial or ignorance about the disability.
I strongly believe that unless this denial/ignorance is dealt with FIRST, it is difficult to succeed working with them. Denial and ignorance about the disability means that they are not planning with full information but are making major decisions with a huge piece of vital and relevant information missing. Making decisions with missing information is bound to lead to erroneous choices and decisions.
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